~ Aspiring to be a Proverbs 31 woman includes laughing at the days to come. I'm starting by laughing at myself. Join me!

Roots of Stigma, Seeds of Hope

Medical Marijuana. I’m just going to throw the words out there now, because for some reason they cause discomfort. And I think “uncomfortable” is a good place to start. As I’m watching “Growing Hope” on NBC tonight, I’m having a hard time staying quiet about the topic.

It is fascinating to me, that a treatment that has shown such marked potential, gets so much push back. When getting rid of seizures is notoriously difficult, and in some cases considered impossible, this drug with so much potential is being squashed by legislation.

I’m not here to debate its efficacy, or defend its long-term use, or say that I know for a fact it will work. I’m here to complain that I CAN’T speak to those things because we’ve yet to have the chance to find out. I can tell you that Phenobarbital knocked my boys out so badly that they lost the ability to breathe or eat on their own, and we spent weeks in the NICU trying to figure out what cocktail of drugs would allow them to wake up enough to go home using their max potential. I can tell you that while ACTH worked nicely during the treatment, coming off of it led to an immunity crash that Landon almost didn’t survive. I can tell you tomorrow we’re going to a vision appointment because being on Sabril requires routine checkups to ensure there hasn’t been permanent vision loss. I can tell you that despite being on 4 seizure treatments at the time, Landon had a seizure in the night that almost led to his death just a few short weeks ago. I could list all of the potential side effects we’ve exposed the boys to in the name of seizure treatment, but you’ll quit reading long before I reach the end. Yet for some reason, when the word marijuana is involved, people get uncomfortable. Ironically, the more successful seizure treatment strains are made from plants that are so low in THC, they are considered hemp, and don’t even produce the “high” that is causing a lot of the social stigma. But honestly, considering the extreme and known side effects of currently approved and socially accepted drugs, I find that irrelevant. We’ve known for years there is potential, yet it has been socially downgraded, and politically ignored for far too long.

I’ve met a lot of wonderful people in our journey with the boys. Everyone’s story is different. But when it comes to seizures, there is a common thread. Despite countless drugs, steroids, diets, and surgeries, very few find success. In the end, the seizures almost always win the war. And while there is no guarantee medical marijuana, hemp plants, and CBD oils will change that in every circumstance, I can’t for the life of me figure out why someone in a suit who is unaffected by it says the medical community shouldn’t give it a fair shot.

For now, I just ask that when you hear about hemp and marijuana plants, or plant-based CBD oils being used as seizure treatments, that you stop picturing Jay and Silent Bob, and start picturing kids like Landon and Nolan.

And somewhere out there, if you’re someone in power who could help advocate for the research and legislation needed, and you’re still sleeping on it, understand this: I go to bed every night praying this isn’t the night a seizure quietly wins. So while you’re “sleeping on it”, moms like me aren’t getting any rest.

This post is amazing. I suffer from a chronic illness that would also benefit from treatment of medical marijuana, and my mother died from complications of the same disease. I am not looking to get high. I understand that it would need regulation and potentially require me to sacrifice some freedoms (such as operating a motor vehicle). You have hit the nail squarely on the head with this post, and I commend you for voicing your opinion.

Good for you Melody! Our “special ones” need our voices and advocates. Er it be medical, financial, educational…..whatever their needs, they need a voice. It is a never ending journey, we face challenges every day. Just when I think we have things worked out it is like….nope just kidding. Mother worked so hard it get things for Brad for 52 years to make his life better and it continues today, but I am not giving in. I have picked up where she left off 2 1/2 years ago. You just keep talking and asking and searching even when it seems as though the doors keep closing.
I admire you, Justin and the rest of the family. I know you are a strong woman/mother/wife but you have your downs as well. Determination…….. Love to all.

I was watching this & immediately thought of your boys. As sick as these children are it’s hard to believe that the cannibus oil or hemp oil could be any worse. I will support this effort in any way I can. Kathy Davis

Melody I commend you for your open determination and advocacy for your boys. People who don’t have special needs children don’t know what it’s like to try and find a treatment or therapy that will help your kids, no matter how minute a difference it makes. I still keep looking for different things for my boys that might help them or a program that might help them.

The biggest obstacle remains that were it legal, it would be significantly less expensive than so-called conventional meds and so big pharma puts a lot of money in politicians’ pockets to help keep it off the shelves so they can continue to rake in money. People and groups with money have worked so hard to stigmatize marijuana to the point that its very real benefits are ignored. Yes, some strains give people a mellow high, but it is also a very real, very effective, very NATURAL medicine.
What’s really sad is that many parents who are fed up with the side effects and have moved their children to CO to give them access to CBD oil treatments are treated like criminals, as though they’re lighting up blunts for their children behind the bleachers at pre-K. (Loved your Jay and Silent Bob reference).
If people just took the time to read the research that’s been done, they would see that it is not only effective, but eliminates so many of the harmful side effects of conventional treatments.
I’ve been fascinated by the work of the Stanley brothers in CO and their non-profit Realm of Caring that focuses on developing MM products for children. Their strain, Charlotte’s Web, contains almost zero tetrahydrocannabinol (THC) (0.3%) and 20% cannabidiol (CBD) — believed to be the highest CBD level. It completely stopped the seizures of a three-year-old girl who previously had several seizures daily for her entire life. No bad side effects, no other seizure medication needed.
There are all these testimonials that it works, it heals, and yet doors are closed on further research. I don’t think the doors will be closed forever — we’ve seen tremendous progress in the last five years — but in the meantime, children like yours continue to suffer when there is very likely a real medicine that could truly help them to live without seizures and function at full capacity. I just hope that people will continue to open their minds and demand legislature for Landon, Nolan, and children like them.
Thank you so much for writing about this. I have no doubt that your post has helped open a few minds.

I’m not sure if you are aware, but pro-marijuana groups in Ohio are working hard toward getting an amendment on the ballot for November. It would legalize marijuana for persons over 21 AND would also make medical marijuana LEGAL for MINORS with parental consent.

I’m on just ONE of these destructive meds. Nothing to the degree of these little guys. So many neurological conditions seem to have promising results with the use of medical marijuana over the use of say, Tegretol, which has side effects so severe that I’m left having my liver enzyme levels tested every 3 months. This blog post is one of the best, most articulate opinions on this I’ve read. It’s very easy for people to judge that which they don’t understand. Continued prayers for these sweet boys and all their family and caregivers.

I agree 100%! The people in the suits who are resting comfortably, sleeping on it, are not the ones who are up all night with the sick child, who could benefit from this supposed “schedule 1” drug. when the side effects of taking the anti-convulsants are far worse than the seizures thrmdelves, what do you do as that child’s parent? are those same people in those suits making those same types of decisions with their children? most are not ……